Abstract

In Australia, disease registers for acute rheumatic fever (ARF) and rheumatic heart disease (RHD) were previously established to facilitate disease surveillance and control, yet little is known about the extent of case-ascertainment. We compared ARF/RHD case ascertainment based on Australian ARF/RHD register records with administrative hospital data from the Northern Territory (NT), South Australia (SA), Queensland (QLD) and Western Australia (WA) for cases 3–59 years of age. Agreement across data sources was compared for persons with an ARF episode or first-ever RHD diagnosis. ARF/RHD registers from the different jurisdictions were missing 26% of Indigenous hospitalised ARF/RHD cases overall (ranging 17–40% by jurisdiction) and 10% of non-Indigenous hospitalised ARF/RHD cases (3–28%). The proportion of hospitalised RHD cases (36%) was half the proportion of hospitalised ARF cases (70%) notified to the ARF/RHD registers. The registers were found to capture few RHD cases in metropolitan areas (SA Metro: 13%, QLD Metro: 35%, WA Metro: 14%). Indigenous status, older age, comorbidities, drug/alcohol abuse and disease severity were predictors of cases appearing in the hospital data only (p < 0.05); sex was not a determinant. This analysis confirms that there are biases associated with the epidemiological analysis of single sources of case ascertainment for ARF/RHD using Australian data.

Highlights

  • Rheumatic heart disease (RHD) is the most common cause of acquired heart disease in children globally [1]

  • To describe case ascertainment on the registers, we calculated the percentage of acute rheumatic fever (ARF)/rheumatic heart disease (RHD) patients identified in hospital administrative on the registers, we calculated the percentage of ARF/RHD patients identified in hospital administrative data who had an ARF/RHD record on a register

  • The cases only found in the hospital data had a higher percentage of individuals with ‘RHD only’ diagnoses, comorbidities, complications and a and history of drugs/alcohol abuseabuse compared with those only recorded on a register

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Summary

Introduction

Rheumatic heart disease (RHD) is the most common cause of acquired heart disease in children globally [1]. It is a sequela of acute rheumatic fever (ARF), caused by an abnormal immunological response to a group A streptococcal (GAS) pharyngitis [2] or impetigo [3]. Spontaneous resolution of ARF symptoms occurs in most cases over weeks to months; 50–75% will progress to the chronic valvopathy of RHD [1]. Some 35% of Indigenous cases progress to RHD within two years and 61% within ten years of their first ARF episode [5]. The incidence rates of ARF and RHD substantially decreased in high-income countries during the 20th century [6], there remains a significant burden of disease in disadvantaged minority populations, including Aboriginal and Torres Strait Islander

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